H.I.V. Patients Get Fresh Hopes for Donor Organs

By JEFF STRYKER

Published: December 11, 2001

Last spring, doctors told Mr. Kramer he had as little as a year to live. His liver was failing, a consequence of hepatitis B infection complicated by H.I.V. His weight had dropped to 120 pounds from 160, and fluid was accumulating in his abdomen. Doctors repeatedly punctured his belly with long needles, draining 12 liters of fluid at a time.

This fall, speaking from his weekend home in Connecticut, Mr. Kramer said he was feeling better. An experimental drug, Adefovir, seems to be helping keep his liver disease in check.

The death sentence has not been lifted, but a liver transplant may offer a stay. Mr. Kramer has joined the 18,646 patients on the national liver transplant waiting list, maintained by the United Network for Organ Sharing (UNOS), which operates under a contract with the federal government.

Like Mr. Kramer, a significant number of people with H.I.V. are also infected with hepatitis B or C, or both viruses. Overall, 15 percent of people people with H.I.V. are estimated to have hepatitis C; among gay men with H.I.V., 40 percent are thought to have hepatitis B.

A few years ago, organ transplants for people with H.I.V. were unthinkable. They were not expected to live long enough to justify receiving a scarce donor organ; in addition to the perils of AIDS alone, they were thought to be especially vulnerable to the risks of the immune-suppressing drugs used to prevent organ rejection.

But things have changed. The prognosis for people with H.I.V. has improved markedly since 1996, when combination drug therapy, the famous AIDS cocktails, came into widespread use. Surgeons began trying transplants in people with H.I.V., and initial results suggested that they tolerated immune-suppressing drugs better than doctors had anticipated.

As a result, many surgeons say it is not ethical to deny transplants to H.I.V. patients. But some doctors say such transplants should be done only as part of rigorously designed studies to determine whether the procedure is truly effective.

Dr. John Fung, a transplant surgeon at the University of Pittsburgh, said: ''No one group should bear the brunt of the organ shortage. People with H.I.V. should not be singled out.''

In the last four years, Dr. Fung said, 14 liver transplants have been done in H.I.V.-positive patients at Pittsburgh and the University of Miami. Twelve are still alive; one-year survival approaches 90 percent, comparable to that for recipients without H.I.V.

Dr. Fung, who will perform Mr. Kramer's transplant if a liver becomes available, said, ''Cardiovascularly and neurologically, Larry is in as good shape as any of our other candidates.''

Mr. Kramer is following an exacting diet and exercise regimen to get in shape for what could be a 10-hour operation. ''I feel better,'' he said. ''I work. I drive. I go to the gym. I travel. And I kvetch when I have a cold,'' he added, sniffling and coughing.

Dr. Fung's sentiments are similar to UNOS guidelines, which state that an H.I.V.-positive, asymptomatic patient ''should not necessarily be excluded from candidacy for organ transplantation, but should be advised that he or she may be at increased risk of morbidity and mortality because of immunosuppressive therapy.''

Not many transplants have been done in patients with H.I.V. UNOS counts 94 between 1988 and 2000, including 33 liver transplants. (The numbers may be incomplete because of state confidentiality laws restricting information about patients' H.I.V. status.) Eleven of the 33 liver transplants in H.I.V.-positive recipients were performed last year, a small fraction of the 4,954 liver transplant operations nationwide in 2000.

Only 17 of 122 medical centers that perform liver transplants have performed them on H.I.V.-positive recipients.

Mr. Kramer counts himself as fortunate, just to have a chance to navigate the transplant system which he calls ''American medical bureaucracy at its worst.''

Mr. Kramer passed what is perhaps the most exacting transplant screening test, what some call the wallet biopsy. After initial denials, Medicare and his private insurer, Empire Blue Cross and Blue Shield, agreed to cover the costs of the transplant, allowing him to travel ''out of network'' to Pittsburgh for the procedure.

Not everyone fares as well. Belynda Dunn, a 50-year-old Boston resident, had trouble with the wallet biopsy. Ms. Dunn's H.I.V. infection was diagnosed in 1991; she has had hepatitis C for 30 years, since receiving a blood transfusion during the birth of her son. She said her H.M.O., Boston's Neighborhood Health Plan, had denied her application and an appeal for coverage for a liver transplant. She filed a further appeal to the Office of Patient Protection, part of the Massachusetts Department of Public Health.

The state contracted with a private review panel, the Center for Health Dispute Resolution in Pittsford, N.Y., a division of Maximus Inc., to review the case. On July 19 the center conveyed the findings of three anonymous transplant physicians in a letter to Ms. Dunn's lawyer, Bennett H. Klein.